by Ben Leach Originally published Online at OncLive.com on Friday, October 5, 2012. Bonnie Addario Nine years ago, Bonnie J. Addario was a successful fifty-something California businesswoman whose active lifestyle was being disrupted by persistent chest pain. Her doctors thought the pain stemmed from a bulging neck disc and, after months of fruitless exercising and frustration, she decided to pay for her own full-body computed tomography (CT) scan. As it turned out, she had stage IIIB lung cancer. Addario emerged from the trauma of her cancer journey with a desire to improve the experience for others. “It shouldn’t be that hard to get a good diagnosis and get good care,” Addario said during an interview at the 13th International Lung Cancer Congress. “There needs to be a change. And I am determined and committed to being a critical part of making that happen.” Today, Addario’s name is synonymous with ground-breaking research and meaningful support for patients. In 2006, she established the Bonnie J. Addario Lung Cancer Foundation, which has raised more than $9 million. In 2008, the Addario Lung Cancer Medical Institute was established as a nonprofit research consortium among top institutions spanning North America and Europe. Addario’s foundation also sponsors a lectureship award, which “recognizes luminaries in the quest to eradicate lung cancer” and supports a keynote presentation at the International Lung Cancer Congress. In July, D. Ross Camidge, MD, PhD, director of the Thoracic Oncology Clinical Program at the University of Colorado Denver, received the fifth annual award. As Addario has gone from patient to survivor, she has learned much about what patients are looking for in terms of information and care. Through her organizations, she is determined to play a part in helping patients with lung cancer achieve better outcomes. “There really is no consensus on standard of care for lung cancer like there is for breast cancer, for instance,” Addario said. “And because there’s such a good standard of care for breast cancer and early detection, the five-year survival rate for early-stage disease is about 90%. That’s where we need to be for lung cancer.” Conducting Her Own Search for Care Addario found that even after she was correctly diagnosed, she had to search for answers on how best to be treated. At first, she was told the tumor was in such a difficult position that a biopsy could not be performed. “It was too close to my heart for them to get in close enough to get any tissue,” she recalled. “So then they told me that the only option really was surgery to see what was in there, and that just didn’t sound good to me. You’re going to cut into my chest and explore?” By chance, Addario read a newspaper story about a partnership between Melissa S. Lim, MD, medical director and founder of Redwood Pulmonary Medical Association and a doctor at Sequoia Hospital, and David M. Jablons, MD, a professor in the Department of Surgery at the Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco. The partnership allowed the pair to see difficultto- treat patients. “They recommended a chemotherapy/radiation combination to reduce the tumor as much as they could. And then if that was successful, they would consider surgery,” Addario said. “We got to that point. I had all of the therapy, and David said that it’s still very difficult and it’s a challenge, but if you’re up to it, I am. He said, ‘Because if you don’t have it, you for sure won’t live.’ So we did it. We had the surgery, and I’m a grateful patient.” After she was diagnosed with lung cancer, Addario found out that her own family has a history of lung cancer; her mother, in fact, was diagnosed with the disease after she was. As a result, her foundations aim to advance both emerging research and patient support. Connecting Patients With Information The Addario Lung Cancer Medical Institute focuses on collecting and analyzing tissue, blood, and plasma samples from patients treated through community hospitals. “Patients are not getting molecular testing at the rate they should be,” Addario said. “Many deserve a targeted drug, and they’re not being given a targeted drug because they’re not being given the testing. So our goal there is standard of care.” The Bonnie J. Addario Lung Cancer Foundation concentrates on fundraising and public awareness campaigns. The first campaign was designed to raise awareness about getting CT scans to diagnose lung cancer. It has since grown into a resource network for patients and their families, with a particular emphasis on using the Internet to connect to resources. In June, the foundation launched its Lung Cancer Living Room, which consists of live stream broadcasts of an interview with an expert every third Tuesday of the month; patients and their families can type their questions and get answers from the doctor immediately. Addario estimates that about 1700 people tuned in to one broadcast. “There’s a breast cancer support group on every corner. Finding a lung cancer support group is not as easy. More often than not, when a patient is in treatment, it’s very difficult for them to travel any distance of any kind, and come at night because most people are still working, too,” Addario said. “Now we’re able to bring it home to them in their living room, where they can relax and have a cup of tea.” Addario believes that one of the biggest hurdles to better lung cancer care is the stigma surrounding the disease because of its association with smoking. She said that the negative perceptions contribute to a lack of resources being channeled into studying causation and prevention. “I never ask anybody if they smoked or not,” she said. “The worst possible thing that can happen to you is that in one moment you hear you have cancer—I don’t care what kind it is—and, oh, by the way, you should be ashamed, too, because you brought it on yourself. “We need to work on smoking because I personally think it’s not a good thing for anyone to smoke, but we shouldn’t take it out on people who have cancer,” Addario said. “We need to take just as good care of these people as we do any other patient with any other disease.”
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Taylor Bell by Taylor Bell, Guest Blogger The following is in reference to my recent post, "The White House is "Pink". What about LUNG CANCER?" I just got a text from my godbrother who recently lost his grandmother to breast cancer, and I wanted to share it with y'all. Josh said, "Not sure if you meant it, but in your stuff about lung cancer being forgotten in the last few days, you come off as very... I don't know the best way to put it but the most polite is probably desensitized to breast cancer. I get what you are trying to get across but others might not. It seems very close to, '$@#& breast cancer - that's not even the worst one!!' Just thought I would let you know so you don't alienate a potential proponent for awareness because they get turned off." I hope you guys don't feel that way. Here is my response: "I'm sorry if it comes across that way; anyone who knows me that I support all types of cancer! I work in cancer care and give every breathing second to cancer in some way. You know, I actually admire what the breast cancer movement has done over the past 40 years by increasing survival rates to nearly 98%. But what is unfair is the desensitizing attitude that the general public has done to lung cancer patients. I will shut up when people stop asking me if I smoked to get lung cancer. Until then, it's freedom of speech and everyone who I care about knows my heart and intentions and that I support all types of cancer, including breast cancer." After thinking about it and talking with my sister, I think the honest truth is that I am extremely jealous of what the breast cancer community has been able to do. I am jealous of their survival rates, their funding, the lack of stigma. I am jealous of what their PR campaigns have been able to do. And I hope to one day get lung cancer there.
So, for anyone's feelings that I hurt or if I came across harsh or uncaring - for that I am very sorry. I hope everyone knows and understands my heart. They know that I chose to go into cancer care to make a difference for all cancer patients. No cancer is better or more important than one cancer or the other. I do believe, though, that it is my duty and obligation as one of the 15% to speak up on behalf of everyone who isn't able to speak up.
Taylor Bell by Taylor Bell, Guest Blogger The White House is “Pink” this month, but what will they do for Lung Cancer Awareness in November? NOTHING I’M SURE. Do people even know that November is Lung Cancer awareness month? Unfortunately, I doubt it. Sad. Pathetic. Hurtful. Shameful. Stigmatized. Unrecognized. Underfunded. Unimportant to Most. Why? Because everyone thinks that in order to get Lung Cancer you have to smoke, and because you smoke you somehow deserve lung cancer. NO ONE deserves cancer of any kind. Not all smokers get lung cancer and not all lung cancer patients are smokers. Actually 60% of the newly diagnosed are NEVER smokers or former smokers who quit decades ago. ALL cancers deserve the same recognition and awareness that breast cancer gets. We as a society do a disservice to the general public by hyping up breast cancer as much as we do and ignoring all of the other cancers that effect EVERYONE, specifically lung cancer. I’ve said it before but I am going to say it again. Lung Cancer is the NUMBER ONE cancer killer of MEN AND WOMEN in this nation. It kills more people than breast, prostate, colon and pancreatic cancers combined. It is the least funded of all major cancers and the stagnant 15.5% survival rate has remained unchanged for 40 years. 160,000 people will pass away from lung cancer this year alone in the US. For those of you who don’t know, there is one person who is doing everything humanly possible to raise awareness for this disease. Kelcey Harrison is running across the UNITED STATES. Who can say they have done that? I would be surprised if anyone can say they have accomplished that task. 30-40 miles a day for 18 weeks straight….. What more could a person do to bring awareness to this horrible horrible cancer?! There is NOTHING more she could do. She is giving EVERYTHING possible. ABC News Photo So, why hasn’t the national news media picked up this story? Who knows? Is it because of the stigma? Is it because it’s not the “pretty pink cancer”? Is it because Lung Cancer doesn’t matter to most people? I mean, the girl is RUNNING ACROSS THE UNITED STATES. Why isn’t the TODAY Show, Good Morning America, Ellen, Oprah, Brian Williams, Rock Center begging her to be on their telecast? STIGMA. PERIOD. That’s right folks, we have stigmatized this disease for so long that we have made everyone think that ONLY smokers get lung cancer and that they deserve it and therefore, Lung Cancer isn’t important. Lung Cancer happens to people from all walks of life, Moms, Dads, Grandparents, Aunts, Uncles, Children, Siblings, Sorority Sisters, Division I College Athletes, NEVER SMOKERS, NFL Wives, Famous Singers and Actors, the list goes on. From the great words of Katie Couric “It’s time to put the blame game aside, and figure out what is really going on.” Please join me in trying to bring much needed awareness to Lung Cancer and bringing publicity to the one person who can say they have given everything humanly possible to raise awareness for this dreaded disease. Please follow @greatlungrun on Twitter or visit her website and fundraising page at www.thegreatlungrun.com and www.Crowdrise.com/thegreatlungrun.
10/2/2012 34-Year-Old Mother And Lung Cancer Patient Teams Up With The Bonnie J. Addario Lung Cancer Foundation For Frys.com Golf Tournament (October 8-14, 2012)Read NowNatalie DiMarco, Daughter of Fry's Electronics CEO John Fry, Rallies Supporters to Raise Monies to Eradicate Lung Cancer SAN FRANCISCO, Oct. 2, 2012 /PRNewswire via COMTEX/ -- Natalie DiMarco is on a mission: to get the attention of First Lady Michelle Obama, Ellen DeGeneres, NBC Today Show's Natalie Morales, Howard Stern and a celebrity roster of high-profile media influencers (and the world) to stand up and pay attention to lung cancer. Almost immediately after being diagnosed with lung cancer, the North Bay, CA mother of two launched her personal campaign to beat the disease, and to tweet to get the attention of media influencers and proactively spread the word. She's also focused on improving all aspects of her life, both physical and emotional. She tweets the media stars with a heart-tugging message that includes a photo of her five and three-and-a-half-year-old daughters, Nicole and Megan: "Here are my two beauties promoting awareness for me, a non-smoker lung cancer survivor at age 34." DiMarco is bringing her team of supporters - Team Natalie, to the "Frys.com Open," Oct. 8-14, 2012 at CordeValle Golf Club, in San Martin, California. Frys.com has been a strong supporter of the Bonnie J. Addario Lung Cancer Foundation (BJALCF), which has been earmarked as the featured charity on Oct. 13th at the tournament. The foundation has been a lifeline to DiMarco and her family since her diagnosis. For DiMarco, a non-smoker, the mission to spread awareness about lung cancer is personal and passionate. In March 2010, on her daughter's first birthday, and after months of numerous doctors misdiagnosing her constant cough and inability to catch her breath, she was dealt a bitter blow: Stage IV lung cancer. "It took me a long, long time and several different doctors and two biopsies before I was diagnosed properly," she said. "My first thought after hearing the news, was what was going to happen to my daughters?" My next thought was: "OK what do we have to do?" Today she is determined to fight the disease and help the 1.6 million people who will be diagnosed worldwide with lung cancer this year. Only 15.5 percent will survive. She is determined to quadruple the survival rate. "We need an army behind us to let the world know what lung cancer patients face and to get the medical community to start aggressively diagnosing and treating this cancer fast," she says. "Lung cancer is an epidemic and I believe we need to rally and do whatever we can to spread the word about how many people this disease is hurting." DiMarco is making an impact. For two years in a row she has brought together Team Natalie at the BJALCF San Francisco 5ks in Golden Gate Park and with about 100 team members each year, she has raised nearly $45,000 so far. "We are thrilled to be the featured charity of the Frys.com Open," said Bonnie J. Addario, founder of BJALCF and 7-year survivor. "Natalie hopes through telling her story that everyone will be encouraged to speak up about lung cancer and not be afraid of the stigma. She gives a powerful voice to all lung cancer patients, especially those diagnosed so young. It shows we are standing up to fight this disease-an epidemic, and together we can bring hope home. You can join Natalie in the fight against lung cancer by participating with us in Fry's.com Open." Currently Natalie is being treated at the Stanford Cancer Clinic and has undergone 39 cycles of chemotherapy - distributed every three weeks. She is also receiving an aggressive Eastern energy-healing regimen at Wu's Healing Center that includes: meditation, organ massage, yoga, herbs, breathing techniques, eating local organic foods and removing the upsetting drama in her life. It has been vital to her progress that she is part of the treatment team with her doctors and they all collaborate with each other. Key to her treatment is the emotional support she and her mother, Teri, have received through the Bonnie J.Addario Lung Cancer Foundation. Determined to accompany and support her daughter on her journey through cancer, Natalie's mom, Teri, is a regular attendee at the foundation's monthly support group - The Lung Cancer Living Room®. The foundation connects patients, physicians, researchers and all involved in lung cancer to work collaboratively and most importantly to share the latest breakthroughs to give patients like DiMarco a voice and access to the best treatments. "The foundation has been a godsend for me and my family," says DiMarco. "I was blessed to go all over the county and learn about cancer. I want others to realize that the foundation is the place to go for lung cancer patients. If I hadn't gone there, I wouldn't have met my doctor and learned about all the tools and techniques I am using. Other patients don't know BJALCF is the place where they can be connected to the best treatment out there." She added: "My focus is that this cancer is a blessing. If I hadn't been diagnosed with cancer, my kids would have never learned about nutrition and how diet and exercise can play a significant role in balancing your body and in making mommy feel better again. My kids will be healthier and stronger because of all of this. " About the Bonnie J. Addario Lung Cancer Foundation BJALCF is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. The Foundation works with a diverse group of physicians, organizations, industry partners, individuals, survivors, and their families to identify solutions and make timely and meaningful change. BJALCF was established on March 6, 2006 as a 501© (3) non-profit organization. SOURCE Bonnie J. Addario Lung Cancer Foundation Copyright (C) 2012 PR Newswire. All rights reserved |
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